Y'know, Serena --- The hardest thing coping with a chronic illness is admitting to yourself that you're no longer the person you once were and the uncertainty. The saddest thing is knowing that your family feel the same!
My daughter grew up knowing mum wasn't like other mums. I spent so much time in and out of hospital that in her primary school years she was almost part of a one parent family! For most of her young life she never understood the full impact of the disease and kind of accepted that mum wouldn't be able to go to certain places or do things other mums could do. I guess I was so wrapped up in myself and so alone in the early days, which I like to refer to as my wilderness years! that I had little time to worry about how my family were coping.
Our children are much more resilient than we give credit for and in some ways I feel that my daughter has matured into a warm caring person because of it, take the fact that she wants to become a nurse! I'm sure at times she must have hated the situation, as we all did. But she made the best of it and came through.
I think we have to stop blaming ourselves in the beginning. We have no choice when it comes to illness -- it's not made to order! It's how we deal with it that matters. My daughter is a typical teenager who does typical teenager things. We have our moments just like any other, mainly the slamming door type. Like you, I don't wallow in self sympathy and I try to carry on as normal. But it's always mum she runs to in a crisis, always mum to do her deeds and most importantly I'm here to do it!
Your boys have a very special mum because not only is she dealing with her own problems, she dealing with parenthood immaculately. Your boys will become loving and selfless young men and when that day arrives -- tell me I'm wrong if you dare!
Sometimes it's better not to know the truth and sometimes it's hard to take. One thing to take credit for in raising kids with morals and dignity when there is so much bad in the world from parents who care nothing about what their kids get up to on the streets.
Carry on regardless, my friend. This condition may be rare but so are we!